Reply To: Droopy Face!
Hi Susan! Welcome, and thank you so much for your reply! Wow, sounds like you have a lot of the same symptoms as I do.. Did you have all the “typical” findings on your LP, and EMG/NVCs, reflexes etc for CIDP? My symptoms not only stablilized but REALLY improved after the 2nd IVIG (first maintence dose).. however then I got a virus (a cold, cough/fever etc) and I guess got a relapse, so that next round didn’t help much.. this last one has helped more again.. but I don’t feel like we have found the “right” dose/frequency yet.. Are you on anything else besides IVIG?
Dawn Kevies mom- Yup, you can call me Kelly 🙂 Funny you say that about the palpitations.. not only did my heart rate go up from it’s usual 60beats per minute up to the 130’s consistently, but I also had A LOT of palpitations (leading me to ignore it for a while thinking it was post partum hyperthyroid). The 2nd IVIG took away my fast heart rate, the 1st one took away my GI issues! They did a test according to my neuro (I think a blood test) for Miller Fisher and itw as normal- however, if it was an antibody test then it might be a false negative (I don’t mount antibodies apparently, at least that they have ever been able to measure after illnesses and vaccines etc). Interesting you mention lupus.. My ANA (one of the only antibody tests ever to be positive for me) initially when I just had the heart rate, just not feeling well, was 1:80, and then when my neuro symptoms flared it went up to 1:640.. So lupus is on the table (I have an appointment with a rhemy in April).. though my SSDNA was negative in the past. No rash on my face ever or skin infections. I do have an eczema/psoriasis like rough spots on my legs, but that’s just since started the IVIG.. so I assumed it was an IVIG reaction, as I got small blisters on my palms and feet with the IVIG as well, though not the last 2 times.. It’s strange, but I kind of want that reaction again, when my skin reacted the most, I got the best effect from the IVIG!!
My Neuro is confident in my diagnosis of “inflammatory neuropathy”.. which she also puts down on the diagnosis sheet as CIDP. My protein was 45 the first time 98 or something the 2nd (however I had meningitis the 2nd time.. so not sure if that skewed it).
As of now My last dose of IVIG has worked well, not as great as the 2nd.. but pretty well though.. I am afraid it will wear off earlier than the 3 week mark again, and we will need to modify my schedule/dose…. I just don’t know what to do about work- I need to be able to predict my schedule (usually a few months in advance) and be physically able to do a good job… I get insurance through my job, and went to school (and have school debt) for a long time to do what I do.. So, we depend on my job as well as my ability to take care of the kids when I’m not at work … I’ll do what I gotta do, but I love my job, and if I have another set back, I think that might really be in jeopardy. As soon as I think my IVIG may be wearing off I’m going to call the neuro to let them know and ask what to do.
Thank yall so much!